Things you might like to know...

It is inevitable that we will be in hospital for a long while now. I half jokingly mentioned being home by February half term to Daisy's dietitian today but she said I shouldn't think about dates anymore so that I'm not disappointed. We know that another stay in GOS is on the cards, probably in the New Year, for a full thickness biopsy and endoscopy, that way we will know definitively if Daisy's intestinal system will ever work properly and if not then at least we can prepare ourselves for long term TPN.

I'm trying to get things in place to support Daisy's developmental needs while in hospital. She currently has funding in place to attend school full time, even though she is still only in the Foundation stage. Even if she did not have this statement she would be able to access early years support. While in hospital however she is receiving nothing. The ward teacher here is really only equipped to teach older, more able children. Daisy's needs are so specialised as she is partially blind - hence the reason we worked so hard to get her to the school of our choice which specialises in teaching children with sensory impairments. She was coming on so well and we don't want her to miss out just because she is in hospital. The other problem is being in isolation. As she is MRSA positive she cannot leave her room, also her immunsuppressed status means that she is very susceptible to infection. Ontop of all of this she is tied 24 hours a day to her TPN pump. At school she was getting physio and all of the other therapies a child with complex needs should have, this has all been put on hold while she is in hospital. This is going to be my mission over the next couple of weeks to get a longer term care plan in place for her so that she continues to move forward.

This laptop has been very helpful in keeping Daisy entertained, we spent ages on the Something Special website today and used the webcam so that she could see herself on screen - she signed "me" and "mummy" when she saw us on screen. I just wish there were more people involved with her on a daily basis who are able to use sign language, she understands so much but only Andy and I really know what she is trying to say.

Our other project is getting things in place for us all to be able to spend Christmas at our hospice. It appears there now may be a problem with Daisy using the ward TPN pump, something to do with insurance, and as she is the only child in the PCT area on TPN there is no mobile pump in the community for her to use and it is too short notice to order one. Daisy's consultant is on the case, she is a mum of 3 young children herself and there is no way she will allow us to miss Christmas together as a family because of a bit of paperwork!

3 comments:

A sneaky idea - could you use one of our portable pumps for the couple of days??? CHASE know how to use it and we have a few giving sets. Insurance could be an issue but desperate times.... Give me a buzz if it could be useful.

I have four extraordinary children, my two boys have a diagnosis of high functioning autism yet they could not be more different, my eldest daughter is a creative social justice warrior, my youngest daughter was born with a very rare genetic condition.

In December 2015 I also became a widow, my husband, the father of my children & partner of 27 years, Andy, died of cancer, leaving us with a gaping hole in our lives. 13 months later our darling daughter Daisy died.

My life was never going to be predictablebut as Andy always said, it is what it is, it's how you respond which makes the difference.